Friday, December 4, 2009

Too much reality

After our upbeat posts on the Make-A-Wish trip, we got hit with too much reality. Emily's biopsy the week after returning was a 2 on the 0-4 scale. It was presumed to be a consequence of lowering dosages of rejection meds over the summer to allow her immunity to come back. The doctors were not concerned and responded to this "mild rejection" by dialing up the meds and scheduling another biopsy. The other problem with the biopsy was that they had a tough time getting the catheter in, and after poking her numerous times they gave up on the jugular vein and entered the heart through the left subclavian vein and a 180 degree turn. It was a long, uncomfortable procedure and she left the hospital looking like she'd been in a cage fight.

Needless to say we were anxious about yesterday's biopsy. Fortunately, it went as well as these things can be expected to go. The catheter went right in and the biopsy proved to be a zero. We are waiting for one more blood test to come back but everything looked normal with the heart and the rejection seems tamed.

Emily is also really working hard to catch up with school, having missed quite a bit between the biopsy days and the Make-A-Wish trip. We're all kind of tired from the stress but greatly relieved to be back on track. The higher med doses have brought back the nausea that she had all last spring, but we are hopeful that she will slowly get used to that.

We realize that this heart transplant is not something you do and get past it, but something that requires steady monitoring and that it will have, as the doctors say, occasional "hiccups." I've never had a hiccup though that can be as scary.

Happy Holiday season to all our friends and family.

1 comment:

Legge Family said...

Hi Emily and family. I have been following your journey since earlier this year and I wanted to let you know what an inspiration you and your family are for my family and I. My 14 year old son Timmy received a heart transplant Saturday November 28th and he is doing great. By documenting your journey online you have given us the knowledge and understanding to move forward through this process with confidence.I am sure that you have done the same for other families out there online as well. We will continue to look forward to your updates. You are an amazing young lady with an incredibly bright future ahead of you!

Tim Legge Sr